Living with hope through chronic illness

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Endometriosis Foundation of America

“You’re looking pretty good today. How do you feel?” The response I often want to give is, “I feel like crap, but thanks for asking.” However I’ve come to realize that isn’t helpful to me or the person asking. It just shuts down communication, and I feel worse. I should be grateful that someone asked how I feel, even if it is just in passing.

If someone doesn’t suffer with an invisible chronic illness, it’s impossible for them to understand or comprehend the pain, struggle, and suffering we go through every day. Yet, we want them to understand, don’t we? Except for a few close friends and my husband who have walked alongside me with my invisible illnesses, most people don’t understand the numerous doctors appointments, pills and supplements, and traveling great distances for consults, second opinions, and skilled surgeons.

One of the most effective ways I do my #invisiblefight for the invisible illnesses I and my family have is through social media. It started simply by someone recommending to me a website called Rest Ministries (http://restministries.org), a website that ministers to the chronically ill. It has daily devotionals that speak to my struggles, informative articles, a chat room called “The Sunroom”, and specific groups that I joined to discuss specific illnesses or types of support. Eventually, I submitted several devotionals and articles to Lisa Copen, the founder, and she graciously accepted them for inclusion on the website. At Rest Ministries, I find great camaraderie, empathy, and understanding from fellow writers and others fighting invisible illnesses here.

The three invisible illnesses I have are ulcerative colitis, lyme disease, and endometriosis. Fortunately, my ulcerative colitis has been in remission most of the 33 years I’ve had it by taking daily oral medication. However, my two grown children both have Crohn’s disease, one diagnosed at age 8 and one at age 20, and they have had significant flares and changes in medications over the years. By God’s grace and advancements in research and medication options for Crohn’s patients, they are both in remission. My “go-to” website for information on these illnesses is the Crohn’s and Colitis Foundation of America (http://ccfa.org). This website has webinars with leading doctors and researchers in the field, a separate web area just for teens to talk with one another, the latest information on medications and treatment options, stories of those with Crohn’s or colitis who are making a difference, and many ways to get involved in supporting and promoting these diseases.

Due to the controversy over whether chronic lyme disease is a reality, I found it difficult at first to find reliable information, but through meeting hundreds of patients and being treated by two great Lyme Literate medical doctors (LLMDs), I have found reliable websites that offer names of LLMDs, effective treatment of lyme and its co-infections, and ways to advocate and support legislation for better research and testing. Just a few of those sites are ILADS Lyme Society (www.iliads.org), Lyme Disease Network (www.lyme.net), and the LDA–Lyme Disease Association (www.lymediseaseassociation.org).

Of the three invisible illnesses I have, finding current and reliable information on the internet, or anywhere else, for endometriosis has been the most difficult. It’s not considered a “big deal” in the hierarchy of chronic diseases–a few bad cramps, some severe bleeding occasionally, a few “minor” surgeries, and you should be up and running. If all else fails, most gynecological surgeons recommend a hysterectomy.

I’ve had endo for 27 years, had five laparoscopies, a hysterectomy, worked with a pelvic floor physical therapist, and tried numerous medications, and at age 59, still have pelvic pain. After my most recent laparoscopy in April 2015, I got serious about researching this disease and found that there are only a few surgeons in the U.S. who are endometriosis excision specialists. If you want to learn about endometriosis and find support from others who are experiencing debilitating symptoms, ask to join Nancy’s Nook Endometriosis Education & Discussion Group on Facebook. Two other great resources are the CEC–Center for Endometriosis Care (www.centerforendo.com) and the EFA–Endometriosis Foundation of America (www.endofound.org). Through these groups, I educated myself and am sending my medical records to three excision specialists with the hope of eradicating endo from my body for good.

Finding good resources of information from other people suffering from your same illness, discussion groups on Facebook, Twitter, or websites, or your own experience with good doctors can empower you and give you hope to keep up the #invisiblefight. And you can pass it on to others who are also fighting the #invisiblefight.

My ultimate weapon for my #invisiblefight is prayer and the strength that Jesus gives me when I don’t have the mental or physical strength to function. I know without a shadow of a doubt that God hears my cries when I lie awake at night wanting to sleep, but can’t. He knows my suffering because He suffered great physical pain, too. When no one else understands, He will never leave me nor forsake me. When I am unsure about a medication or treatment plan laid out before me, He gives me His wisdom that is way beyond my finite mind. He collects all of my tears in a bottle and gives me peace in the midst of the #invisiblefight.

But the greatest gift Jesus gives me in the midst of my invisible illnesses is joy. Joy in spite of the circumstances. Joy in His creation if I open my eyes and ears. Joy that He never sleeps and is always awake for a good cry or conversation. Joy when He uses my struggle to comfort and come alongside another who has the same illness. Joy that I can pray for others when I can’t do anything else. Joy that He is my greatest warrior in my #invisiblefight.